Day #91 – 25%

Here we are….25% to the goal.  For those of you who may not have begun this journey with me…

91 days ago I pledged to blog about autism every day for 366 days.  Why?  For my son, Tucker.  My son is not disabled. He is differently abled. By my standards, perfectly abled. I chose 366 days as a theme in honor of leap year.  What a strange, unexplained occurrence….just like autism itself.  Leap year isn’t wrong.  It’s necessary, it’s a part of our life.  It’s just a different type of year.  A child with autism is necessary, is part of our life.  It’s just a different type of child.  They have a little extra something…just like an extra day in the year.

At that moment I committed to one story or resource every day.  I have been humbled by the outpouring love and support for those I know and from those I don’t know.  From California to Poland – people reach out nearly every day.  My husband convinced me I had a story to tell…he gave me the courage to put it out there…and here we are 25% finished.

When I began writing a couple of years ago I would simply journal small stories or thoughts I had about autism – and how it changed lives around us.  Sharing those stories have [evidently] provided voice to a host of people and I have been delighted to help so many.  It seems my ‘voice’ of teacher, researcher, mother, and advocate have combined to provide an interesting point of view.  Our story may be completely like yours, a bit like yours, or nothing like yours – and that is [I think] the ultimate struggle with autism.  Not one child is alike…

About a month ago I was stopped in a parking lot. As I opened my door and was getting in I had someone [who I didn’t know] jump into my vehicle.  Thank goodness I live in Iowa – we barely lock our doors and leave vehicles running in the cold – so I wasn’t immediately terrified.  She looked at me with tears and said, “I know you don’t know me but I know you.  I wish I would have known you 30 years ago.  My son is 43 and I now know after reading your blog that he was and is on the spectrum.  I didn’t know (her tears began).  I didn’t know.  I’m so sorry that I didn’t know.  Now I do…and you’re right it doesn’t matter what his diagnosis is.  I’ve taken some of your advice and applied it to him – and it works.  That’s how I know.  I wonder what he could have been and could have done.  Keep advocating for Tucker – I will keep reading and watching…I see my son in your Tucker…I want to know, through you, all he could have been.  All I can do now is support my son, in the best way I know how, by learning from you.  Thank you.”

Then she got out.  Then I returned home…driving through my own tears.  How much pain and anguish this mother had been carrying.  Carrying around with her for so many years – that she knew something was funky, but didn’t know what.  I can’t imagine the agony…so many years of knowing…but not knowing.

Moments like that propel me to keep writing.

Yes, I work a full-time job.
Yes, I take care of a family.
Yes, I volunteer in my community.
Yes, I read and research like mad.
Yes, I even get to hang out with friends…this is the one thing I wish happened more often – but you know life.

People often ask when I write.  I reply, ‘Whenever I can.  In the car waiting for children, in the morning before they wake, after they go to bed, at lunch…anytime I feel moved to write.  I write.’

I still have a list of stories and facts that I have learned that will keep me writing for the next 275 days.  After that, I will publish – even if it’s self-published.  The issue with publishing is that this story is not one that can be changed – it’s ethnographic.  It’s our story to tell – I have no desire to add details or take out details that make it more ‘readable.’  It is what it is, honest.

After that, I will [most likely] keep writing, but not every day.

So, my question now is this – what is it that is on your mind?  What can I add to my ‘list’ for you?  People have contacted me and asked, “Could you write about ____.”  My answer?  Sure – I’ll write as well as I am able.  A cousin of mine wrote, “Every time I’ve read your blog I’m left with more and more questions…we should lunch so you can answer them.”  Let’s lunch…but how about I write too?  Then you can read during lunch…and it will be just like having lunch.

Leave a note below for our special lunch date…

tuckerburger

 

The best lunch date?

Tucker, a burger fan and…perpetually not looking at the camera.

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4 thoughts on “Day #91 – 25%

  1. Pingback: Day #93 – Dear Other Moms… | 366 Days of Autism

  2. Pingback: Day #327 – Indexing | 366 Days of Autism

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